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. 2025 Dec 23;120(3):199–210. doi: 10.1093/trstmh/traf122

Family quality of life and associated factors among people with leprosy or podoconiosis/lymphatic filariasis with visible disabilities and their family members in Ethiopia: a baseline study for a randomized controlled trial

Moges Wubie Aycheh 1,2,✉, Anna T van ’t Noordende 3,4, Nurilign Abebe Moges 5, Alice P Schippers 6,7
PMCID: PMC13017205  PMID: 41431441

Abstract

Leprosy, podoconiosis and lymphatic filariasis (LF) cause impairment and disability affecting family quality of life (FQoL). The purpose of this study was to assess and compare FQoL and associated factors in people in Ethiopia with disabilities caused by leprosy, FL or podoconiosis and their family members. A cross-sectional study was conducted in the East and West Gojjam Zones of Ethiopia. Study participants with visible disabilities were selected by simple random sampling; however, family members were selected purposively. Data were collected using the FQoL, SARI, PHQ-9 and Participation Scale. Descriptive statistics and linear regression were used to analyse the data. These findings are based on baseline data collected before the intervention phase of a randomized controlled trial. A total of 416 people with disabilities and 416 family members participated in the study. The overall mean FQoL score for both groups was 75.4. Among people with disabilities, FQoL was significantly associated with increasing age (β=0.045, p<0.001), disease type (leprosy, β=0.561, p<0.029), stigma (β=−0.274, p<0.001) and participation restriction (β=−0.740, p<0.001). For family members, disease type (leprosy, β=3.910, p<0.001), student or unpaid work (β=3.640, p<0.001), marital status (single, β=1.803, p<0.033) and residence (rural, β=3.160, p<0.002) showed a significant association with FQoL. To improve FQoL, a targeted family-based care package should address challenges related to age, disease type, stigma and participation restrictions of people with disabilities as well as the sociodemographic factors affecting their family members.

Keywords: Ethiopia, family members, family quality of life, leprosy, lymphatic filariasis, people with disability, podoconiosis

Introduction

Leprosy is an infectious disease caused by Mycobacterium leprae. This disease damages nerve fibres, impairs or eliminates skin sensation and lubrication and weakens muscles, all of which contribute to the development of physical impairments.1 The hands, feet and eyes are the main areas where these impairments manifest.2 In addition, lymphatic filariasis (LF) is an infectious disease caused by the parasites Wuchereria bancrofti, Brugia malayi and Brugia timori, which are transmitted through the bite of an infected mosquito.3 Acute attacks and lymphoedema in LF can damage lymph nodes and cause swelling and enlargement of the legs, arms, genitals, vulva and breasts.4 Podoconiosis, on the other hand, is an endemic, non-filarial elephantiasis of the lower legs caused by prolonged barefoot exposure to red clay soils of volcanic origin.5

All three conditions are neglected tropical diseases (NTDs)6 and can result in temporary or permanent impairment and disability if left undetected or untreated or if self-care practices are not followed.4,7

People with leprosy or podoconiosis/LF often face stigma and discrimination due to their impairments and disabilities.8,9 They may also experience limitations in social participation10,11 and mental health problems.8,12,13 In addition, these conditions frequently lead to economic difficulties, as disability reduces productivity.14–16 Together, these factors negatively affect the quality of life (QoL) of people living with these NTDs. Because of these profound and chronic effects, QoL—used as a measure of overall well-being—has received increasing attention in research.17,18 Beyond the individuals affected, psychosocial and economic consequences also extend to family members, impacting the family quality of life (FQoL) of entire households.8,19,20

FQoL is an extension of individual QoL within disability studies.21 Given the importance of the family unit as an integral part of society, the conceptualization and measurement of FQoL is based on the idea that the QoL of people with disabilities is closely related to their environment, particularly their family.22–24 According to Park et al.,22 FQoL refers to ‘conditions in which family needs are met, family members enjoy life together, and family members have the opportunity to do things that are important to them’. Zuna et al.25 further defined FQoL as a family’s collective and subjective sense of well-being, shaped by its members and influenced by individual and family-level needs. Despite the prevalence of disabilities related to the three NTDs in Ethiopia and their impact on family members, little attention has been given to the FQoL and factors associated with it among people with disabilities and their families. One study was conducted by the research team in a different zone of the Amhara Region in Ethiopia.20 However, that study had a small sample size and did not examine the interaction between FQoL and mental well-being or social participation. Additionally, there were limitations to the tools used: the Screening of Activity Limitation and Safety Awareness Scale was not optimal for assessing limitations due to podoconiosis/LF, and cross-culturally validated tools were not employed to assess outcome variables.

The aim of the present study is twofold. First, we aim to assess the level of FQoL among people with disabilities due to leprosy or podoconiosis/LF, as well as among their family members. Second, we aim to identify factors associated with variations in FQoL among people with disabilities and their family members.

Based on the results of this baseline study, a randomized controlled trial (RCT) comparing a family-based approach to usual care and practice will be conducted among people with one of the three NTDs and their family members.26

Based on the existing literature and identified research gaps, we hypothesized that various individual, social and disability-type factors influence both people with visible disabilities due to leprosy or podoconiosis/LF as well as their family members. Specifically, we anticipated that characteristics such as age, sex, marital status, income, disease type and residence would significantly affect the well-being of individuals with disabilities. Additionally, we expected these factors, as well as caregiving responsibilities and household dynamics, to influence FQoL among their family members.

Methods

Study design

A cross-sectional study design was used.

Study area and setting

This study was conducted in the East and West Gojjam Zones, both located in the Amhara Region of Ethiopia. The largest cities in these zones, Debre Markos and Finote Selam, are 300 and 385 km from the capital, Addis Ababa. The East Gojjam Zone has a total population of 2 719 118, consisting of 632 353 households, with 21 woredas (districts) and 480 kebeles (the smallest administrative units). The West Gojjam Zone has a total population of 3 335 515, with 833 878 households and comprises 13 rural districts and 5 town administrations.27,28

According to 2007 Central Statistical Agency data, the majority of people in East and West Gojjam were Amhara people (99.8% and 99.4%, respectively) who spoke Amharic as their first language (99.8% and 99.5%, respectively). Most residents practiced Ethiopian Orthodox Christianity (97.4% and 98.3%, respectively), while a small minority were Muslim (2.5% and 1.6%, respectively). Thus the two zones have similar sociocultural characteristics, making them more comparable to each other than to other zones in the region.26,29

Agriculture is the community’s main source of livelihood. Additionally, rural households engage in various activities to support themselves. The study area practices on-farm, off-farm and non-farm livelihood diversification activities. Despite various development interventions, regions such as West Gojjam continue to exhibit high poverty levels, primarily due to inadequate infrastructure, limited access to healthcare, poor educational opportunities and dependence on subsistence agriculture.30–32

The health service coverage in East and West Gojjam is similar to the Ethiopian system. Ethiopian health services are structured into three tiers, providing primary, secondary and tertiary-level healthcare. Based on this structure, primary-level health centres are proposed to serve a population of 40 000 in urban areas and 25 000 in rural areas, while each health post is intended to serve 3000–5000 people.33

Study population

The study population consists of individuals with grade 2 disabilities due to leprosy or stage ≥2 podoconiosis/LF, as well as their family members living in the same household. Data were collected in six selected districts of East and West Gojjam.34 The distribution of people with disabilities and their family members affected by leprosy and podoconiosis/LF across selected districts in East and West Gojjam is shown in Table 1.

Table 1.

Number of people with disabilities and their family members affected by leprosy and podoconiosis/LF in selected districts of East and West Gojjam Zones, Northwest Ethiopia, 2022.

Zone District Sites (kebeles) People with disabilities and family members due to leprosy, n People with disabilities and family members due to podoconiosis/LF, n
East Gojjam Enarge Enawga Debre Work 96 6
Metiya 16 54
Tanguma 0 56
Shiferie 4 84
Enemay Bichena 42 0
Hulet Eju Enesie Motta 66 0
West Gojjam Dega Damot Feres Bet 12 40
Arefa 8 88
Chat Warka 18 94
Dembecha Dembecha Town 60 0
Wad 38 0
Burie Burie town 50 0
Total 410 422
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All participants with leprosy-related disabilities had previously completed multidrug therapy (MDT), which is widely available through Ethiopia’s public health system.35 In contrast, most people with disabilities due to podoconiosis/LF-related disabilities had not received a morbidity management and disability prevention (MMDP) package, which typically includes foot hygiene education, use of emollients, exercise, limb elevation and provision of protective footwear to prevent progression of symptoms.

Disability grading was conducted according to the World Health Organization (WHO) classification for leprosy-related disabilities, which range from grade 0 to grade 2, with grade 2 indicating visible deformities of the hands, feet or eyes.36 Podoconiosis was staged according to Tekola et al.,37 who describe five stages (stages 1–5). LF-related disabilities were staged using WHO criteria, which classify seven stages (stages 1–7).38

Sample size calculation

The study aimed to include a total of 840 participants, comprising 420 people with disabilities and 420 family members. The sample size was calculated using methods for clinical trials, as the data were collected as part of the baseline assessment for an RCT. For the details, see the RCT protocol.26

Sampling and eligibility criteria

People with disabilities caused by leprosy were primarily recruited from five districts across the East and West Gojjam Zones through local Organizations of People with Disabilities (OPDs). Additionally, people with leprosy-related disabilities who were not affiliated with any OPD group were identified and included from Dega Damot using lists obtained from local health centres and health extension workers (HEWs) in the selected kebeles. Two districts, Dega Damot and Enarge Enawga, were initially selected for the podoconiosis study, while Enarge Enawga was the sole district chosen for the LF-related disability study.34

From all selected kebeles, registration was conducted by five trained data collectors at the nearest health centres, health posts and through house-to-house visits, with assistance from HEWs. Following registration, participants were categorized according to the severity of their disability. For leprosy, individuals with grade 2 disabilities were deemed eligible, while for podoconiosis/LF, individuals at stage ≥2 were included. Although podoconiosis and LF have different aetiologies, their functional impacts are similar and self-care practices for managing disabilities are largely the same. Consequently, individuals with disabilities due to podoconiosis and LF were not differentiated in the data. Finally, random sampling was applied to selected individuals with disabilities, ensuring a representative and unbiased selection across all registered participants in each district. For family members, purposive sampling was applied by asking the primary participant (person with a disability) to identify a co-residing family member most involved in caregiving or household responsibilities. This approach ensured that the perspectives captured were directly relevant to the household context and the objectives of the planned follow-up RCT. People <15 y of age were not included in the study.

Data collection tools

For this study we used four scales: the Beach Center Family Quality of Life (BCFQoL) Scale, the Stigma Assessment and Reduction of Impact (SARI) Stigma Scale, the Participation Scale (P-Scale Short) and the 9-item Patient Health Questionnaire (PHQ-9). In addition, sociodemographic information including age, gender, education level, disability type, family size, place of residence, monthly income and occupation was collected.

The BCFQoL Scale was used to assess the FQoL of individuals with disabilities and their family members. Originally developed to measure the FQoL of people with intellectual disabilities,24 this scale can also be used for people with disabilities caused by leprosy or podoconiosis/LF.19,20 This scale has been cross-culturally validated in the Amharic language.39 The scale consists of 25 items and has five subscales: family interaction (6 items), parenting (6 items), emotional well-being (4 items), physical/material well-being (5 items) and disability-related support (4 items). It is a Likert-type scale. An example item is ‘My family enjoys spending time together’. Response options are 1, very dissatisfied; 2, dissatisfied; 3, neutral; 4, satisfied and 5, very satisfied. The scale has a minimum score of 25 and a maximum of 125; higher scores indicate better FQoL.

The SARI Stigma Scale, originally developed in Indonesia to assess leprosy-related stigma, was used to measure stigma among people with disabilities due to leprosy.40 Prior to this study, the scale was cross-culturally validated in the Amharic language in Ethiopia (unpublished results) and incorporated into the RCT study protocol.26 The SARI Stigma Scale consists of 21 items across four subscales: experienced stigma (7 items), disclosure concerns (4 items), internalized stigma (6 items) and anticipated stigma (4 items). An example item is: ‘Do some people who know you have (had) leprosy/podoconiosis/LF keep more distance from you?’ Response options are ‘no’, ‘yes’, ‘don’t know’ or ‘not relevant’. If the answer is yes, participants are then asked, ‘How often has this happened?’ with possible responses coded as 3, always/often; 2, sometimes and 1, rarely/once. Total scores range from 0 to 63, with higher scores indicating greater levels of stigma.

The P-Scale Short was used to measure the limitations in social and work participation due to disabilities caused by leprosy and LF.41 The P-Scale Short consists of 13 items. An example item is, ‘Do you have equal opportunity as your peers work to find?’ Possible responses are 1, yes; 2, sometimes and 3, no. If you answered ‘sometimes’ or ‘no’, please indicate ‘How big of a problem it is for you?’ Scoring: 1, no; 2, small; 3, medium; 5, large. The total score ranges from 0 to 65, with higher scores indicating greater restriction. Scores are categorized as follows: 0–6, no significant restriction; 7–13, mild; 14–30, moderate; 31–50, severe and 51–65, extreme restriction. The P-Scale was cross-culturally validated in Amharic by the research team in Ethiopia (unpublished results) and the results were reported to the funders. As indicated by the RCT protocol, this is a priority task.26

The PHQ-9 consists of nine items that can be scored in one of four categories. These categories refer to the amount of time a specific symptom is present. An example item is, ‘Little interest or pleasure in doing things.’

The response options range from 0 (not at all), 1–3 (almost every day). The total score ranges from 0 to 27 and measures the severity of depression. The severity classification is as follows: 0–4, minimal depression; 5–9, mild depression; 10–14, moderate depression; 15–19, moderately severe depression; and 20–27, severe depression. The PHQ-9 scale has previously been validated in the Amharic language.42,43

Data collection procedure and period

Five trained nurses were appointed as data collectors by the project. They were familiar with the community and fluent in the local language, which greatly facilitated communication and trust with participants. Most people with disabilities due to leprosy or podoconiosis/LF as well as their family members were interviewed at the nearest health post, health centre or offices of organizations for people with disabilities due to leprosy. In a few cases, data collectors conducted interviews in people’s homes.

Interviews were conducted in private, quiet settings where participants could respond to questions without the presence of others or family members and in a comfortable and distraction-free environment. After reading and signing the consent form the interviews began. Paper-based questionnaires were administered to participants during interviews. On average, it took 60 min to administer the questionnaire to individuals and 30 min to administer it to family members.

Data were collected from September to November 2022.

Data quality control

To ensure data quality, the data collectors received 3 d of training prior to data collection. The training covered the purpose of the study and how to collect the data using the BCFQoL Scale, P-Scale Short and PHQ-9. The two researchers (MWA and NAM) provided supervision and double-checked the completed questionnaires. Cross-culturally validated instruments were used.

Data analysis

The data were entered into Excel (Microsoft, Redmond, WA, USA) and transferred to SPSS version 25 (IBM, Armonk, NY, USA) for the analysis. To better understand the overall FQoL, stigma, participation and mental well-being of our sample, we performed a simple descriptive analysis of the data. This includes calculating subscale mean scores and standard deviations (SDs) and identifying the most notable differences in subscale scores. The results are presented through both narratives and tables. To address our second objective, we used independent samples t-tests to compare FQoL scores between participant groups. To determine the correlation between FQoL and the other three scores (SARI Stigma Scale, P-Scale Short and PHQ-9), we performed Pearson correlations. Finally, to examine the association between FQoL and potential influencing factors, we performed both univariable and multivariable linear regression analyses. Multivariable linear regression analysis allowed us to adjust for the influence of various sociodemographic, clinical and psychosocial factors. Variables such as age, sex, marital status, education, income, disease type and social support were included in the model based on theoretical relevance and prior literature. Including these factors allowed us to isolate the independent association between key predictors and FQoL, thereby minimizing the risk of confounding bias in our findings. All variables with a p-value <0.2 identified in the univariate analysis were included in the initial multivariate model. Ultimately, variables with a p-value <0.05 were considered significantly associated with the outcome variable. We used stepwise multivariable regression with backward elimination methods.

Diagnostic tests were conducted to assess the validity of the regression model. The residual analysis included an examination of scatterplots, normal probability plots and residual histograms. The independence of errors was evaluated using the Durbin–Watson statistic. Multicollinearity was assessed using tolerance and variance inflation factor (VIF) values. Influential cases were identified using Cook’s distance.

Results

Sociodemographic characteristics of the study participants

A total of 832 people participated in this study, including 416 individuals with disabilities and 416 of their family members. The response rate was 99%.

Among the people with disabilities, 205 (49.3%) had disabilities due to leprosy and 211 (50.7%) had disabilities due to podoconiosis/LF. The mean age of the study participants was 55.1 y (SD 12.2). A total of 302 participants (72.6%) were ≤64 y of age. A total of 281 participants (67.5%) were male and most (n=364 [87.5%]) were from rural areas. A total of 378 participants (90.9%) were farmers and 363 participants (87.3%) reported that their income was lower than that of their neighbours. A total of74.5% of participants (n= 310) were illiterate, 81.7% (n=340) were married and 98.3% (n=409) were Orthodox. The mean family size of the participants was 4.7±1.8 and 318 (76.4%) of them had a family size of ≤5 (Table 2).

Table 2.

Sociodemographic characteristics of persons with disabilities by leprosy and podoconiosis/LF and their family members, Northwest Ethiopia, 2022.

Persons with disabilities Family members
Variables Leprosy (n=205) Podo/LF (n=211) Total (N=416) Leprosy (n=205) Podo/LF (n=211) Total (N=416)
Sex, n (%)
 Male 144 (70.2) 137 (64.9) 281 (67.5) 102 (49.8) 107 (50.7) 209 (50.2)
 Female 61 (29.8) 74 (35.1) 135 (32.5) 103 (50.2) 104 (49.3) 207 (49.8)
Age (years), mean (SD) 57.9 (11.9) 52.4 (11.9) 55.1 (12.2) 28.7 (12.7) 36.8 (13.8) 32.8 (13.8)
Family size (n), mean (SD) 4.7 (1.8) 4.6 (1.7) 4.7 (1.8) 4.7 (1.8) 4.6 (1.7) 4.7 (1.8)
Resident, n (%)
 Urban 32 (16.6) 21 (10.0) 53 (12.7) 32 (16.6) 21 (10.0) 53 (12.7)
 Rural 173 (84.4) 190 (90.0) 363 (87.3) 173 (84.4) 190 (90.0) 363 (87.3)
Occupation, n (%)
 Farmer 174 (84.9) 204 (96.6) 378 (90.9) 102 (49.8) 178 (84.4) 280 (67.3)
 Daily labourer 15 (7.3) 2 (1.0) 17 (4.1) 7 (3.4) 0 7 (1.7)
 Private employee 1 (0.5) 2 (1.0) 3 (0.7) 7 (3.4) 2 (0.9) 9 (2.2)
 Student/unpaid work 15 (7.3) 3 (1.4) 18 (4.3) 63 (30.7) 29 (13.7) 92 (22.1)
 Other occupationsa – – – 26 (12.7) 2 (0.9) 28 (6.7)
Education status, n (%)
 Cannot read and write 136 (66.3) 174 (82.5) 310 (74.5) 61 (29.8) 136 (64.5) 197 (47.4)
 Literate (no formal schooling) 46 (22.4) 16 (7.6) 62 (14.9) 46 (22.4) 10 (4.7) 56 (13.4)
 Elementary 6 (2.9) 18 (8.5) 24 (5.8) 13 (6.3) 38 (18) 51 (12.3)
 High school 8 (3.9) 3 (1.4) 11 (2.6) 40 (19.5) 15 (7.1) 55 (13.2)
 Higher education 5 (2.5) 0 5 (1.2) 45 (21.9) 12 (5.7) 57 (13.7)
Monthly family income compared with neighbours, n (%)
 Less than 166 (81.0) 195 (92.4) 361 (86.8) 163 (79.5) 199 (94.3) 362 (87)
 Equal to 39 (19.0) 16 (7.6) 55 (13.2) 42 (20.5) 12 (5.7) 54 (13)
Religion, n (%)
 Orthodox 199 (97.1) 210 (99.5) 409 (98.3) 199 (97.1) 211 (100) 410 (98.6)
 Other religionsb 6 (2.9) 1 (0.5) 7 (1.6) 6 (2.9) 0 6 (1.4)
Marital status, n (%)
 Married 163 (79.5) 177 (83.9) 340 (81.7) 101 (49.3) 147 (69.7) 248 (59.6)
 Single 9 (4.4) 9 (4.3) 18 (4.3) 97 (47.3) 56 (26.5) 153 (36.8)
 Separated 17 (8.3) 16 (7.6) 33 (7.9) 6 (2.9) 7 (3.3) 13 (3.1)
 Widowed 16 (7.8) 3 (1.4) 19 (4.6) 1 (0.5) 1 (0.5) 2 (0.5)
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aWaiver, guard, government work, non-governmental, carpenter, local alcohol maker.

bMuslim and Protestant.

Of the 416 family members, 50.2% (n=209) were male. The mean age of the family members was 32.8 y (SD 13). The majority (n=407 [97.8%]) were ≤64 y of age. See Table 2 for a detailed description.

FQoL

The overall FQoL of people with disabilities due to leprosy or podoconiosis/LF and their family members was 75.4 (SD 8.3; 95% confidence interval [CI] 74.8 to 75.9), indicating a moderate level of FQoL among the study participants. The FQoL scores of the study participants are summarized in Table 3. The mean FQoL scores for people with disabilities due to leprosy and podoconiosis/LF were 79.1 (SD 7.1) and 72.0 (SD 8.9), respectively. The mean score was significantly higher for people with leprosy-related disabilities than for people with podoconiosis/LF-related disabilities (p=0.016, independent samples t-test).

Table 3.

Mean scores for FQoL people with disabilities due to leprosy and podoconiosis/LF and their family members, Northwest Ethiopia, 2022.

People with disabilities by Family members of
Variables Leprosy (n=205), mean (SD) Podoconiosis/LF (n=211), mean (SD) Total (N=416), mean (SD) Leprosy (n=205), mean (SD) Podoconiosis/LF (n=211), mean (SD) Total (N=416), mean (SD) All participants (n=832), mean (SD) Comparison between person affected versus family members (p-value)a
Family interaction (6–30) 22.4 (2.7) 19.0 (4.2) 20.7 (3.9) 22.1 (2.3) 19.9 (3.7) 20.9 (3.3) 20.8 (3.6) 0.274
Parenting (6–30) 20.2 (2.7) 18.5 (2.8) 19.4 (2.9) 20.2 (2.3) 19.2 (3.0) 19.7 (2.7) 19.5 (2.8) 0.095
Emotional well-being (4–20) 10.3 (1.3) 9.8 (1.8) 10.0 (1.6) 10.1 (1.6) 9.3 (1.8) 9.7 (1.7) 9.9 (1.7) 0.007b
Physical/material well-being (5–25) 14.5 (2.2) 13.7 (2.9) 14.1 (2.6) 14.0 (2.5) 13.0 (3.6) 13.5 (3.2) 13.8 (2.9) 0.003b
Disability-related support (4–20) 11.8 (2.0) 11.0 (2.5) 11.4 (2.3) 11.6 (2.2) 11.3 (2.6) 11.4 (2.4) 11.4 (2.3) 0.757
FQoL of total score (25–125) 79.1 (7.1) 72.0 (8.9) 75.5 (8.8) 77.8 (6.1) 72.7 (8.3) 75.2 (7.7) 75.4 (8.3) 0.643
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a

Calculated using an independent samples t-test. The p-value of the mean difference of the FQoL score between people with disabilities and family members.

b

Indicated significance means difference of people with disabilities vs family members.

The overall mean FQoL score for family members was 75.2 (SD 7.7). The mean FQoL score of family members of people with disabilities due to leprosy was 77.8 (SD 6.1), while the mean FQoL score of family members of people with disabilities due to podoconiosis/LF was 72.7 (SD 8.3). These results indicated a statistically significant difference in the mean FQoL scores of family members of people with disabilities due to leprosy compared with those with disabilities due to podoconiosis/LF (p<0.001, independent samples t-test). However, Levene’s test showed that the assumption of equal variance was not met (p=0.003), indicating that there was no significant difference between the overall mean FQoL scores of people with disabilities and family members (p=0.267). However, the independent samples t-test revealed that the mean scores for emotional well-being (p=0.007) and physical/material well-being (p=0.003) were significantly higher for people with disabilities than for family members (Table 3).

Stigma, participation restriction and mental well-being of people with disabilities due to leprosy or podoconiosis/LF

The mean stigma score on the SARI Stigma Scale for people with disabilities due to leprosy or podoconiosis/LF was 24.9 (SD 10.0; 95% CI 24.0 to 26.0). The mean SARI Stigma Scale score for people with podoconiosis/LF-related disabilities was significantly higher than that for people with leprosy-related disabilities (p<0.001, independent samples t-test). Details for all subdomains of the SARI Stigma Scale are presented in Table 4.

Table 4.

Stigma, participation restriction and mental health status of people with disabilities due to leprosy and podoconiosis/LF, Northwest Ethiopia, 2022.

Variables People with disabilities due to leprosy, mean (SD) People with disabilities due to podoconiosis/LF, mean (SD) All persons affected, mean (SD) p-Value of people with disabilities due to leprosy versus podoconiosis/LF, meana
Enacted stigma (0–21) 7.5 (4.0) 10.2 (4.6) 8.9 (4.5) 0.001b
Disclosure issue (0–12) 4.0 (2.2) 5.5 (2.3) 4.7 (2.3) 0.001b
Internalized stigma (0–18) 5.9 (2.7) 7.7 (2.8) 6.8 (2.9) 0.001b
Perceived stigma (0–12) 4.0 (1.7) 5.1 (2.3) 4.5 (2.1) 0.001b
SARI Score total (0–63) 21.3 (8.9) 28.5 (9.7) 24.9 (10.0) 0.001b
Participation restriction (P-Scale) (0–65) 21.8 (6.7) 27.8 (7.5) 24.8 (7.7) 0.001b
Mental health status (PHQ-9) (0–27) 10.3 (4.6) 11.8 (3.7) 11.1 (4.2) 0.001b
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a

Calculated using an independent samples t-test. P-value of the mean difference of the SARI Scale, P -Scale and PHQ-9 score between people with disabilities due to leprosy vs podoconiosis/LF.

bIndicates a significant difference of people with disabilities due to leprosy versus podoconiosis/LF.

The overall P-Scale Short score for people with disabilities due to leprosy or podoconiosis/LF was 24.9 (SD 7.7; 95% CI 24.1 to 25.6). The mean participation limitation score for people with disabilities due to podoconiosis/LF was significantly higher than for people with disabilities due to leprosy (p<0.001, independent samples t-test) (see Table 4).

Additionally, the mean PHQ-9 score for people with disabilities due to leprosy or podoconiosis/LF was 11.1 (SD 4.2; 95% CI 10.6 to 11.5). As shown in Table 3, PHQ-9 scores were significantly higher for people with podoconiosis/LF-related disabilities than for those with leprosy-related disabilities (p<0.001, independent samples t-test).

FQoL relation with stigma, participation restriction and mental well-being of people with disabilities due to leprosy or podoconiosis/LF

According to Pearson correlation analyses, the FQoL showed significant correlations with SARI Stigma Scale scores (r=−0.904, p<0.001, P-Scale Short scores (r=−0.947, p<0.001) and PHQ-9 scores (r=−0.201, p<0.001).

Determinants of FQoL

Two separate multivariable linear regression models were constructed to identify the factors influencing FQoL, one for people with disabilities and one for family members.

The model shown in Table 5 explains 92.8% of the variability in FQoL for people with disabilities due to leprosy and podoconiosis/LF (R2=0.928). This model showed that increasing age was positively associated with FQoL (β=0.045 [95% CI 0.025 to 0.064], p<0.001). Additionally, people with disabilities due to leprosy had higher FQoL scores (β=0.561 [95% CI 0.059 to 1.064], p=0.029). Conversely, individuals with higher levels of stigma and participation restrictions had significantly lower FQoL (β=−0.274 [95% CI −0.321 to −0.227], p<0.001) and (β=−0.740 [95% CI −0.801 to −0.678], p<0.001), respectively.

Table 5.

Multivariate linear regression analysis results for FQoL of people with disabilities due to leprosy and podoconiosis/LF, Northwest, Ethiopia, 2022 (R2=0.928).

Variable Regression coefficient (β) Standard error p-Value 95% CI
Constant 98.000 0.770 0.001 96.460 to 99.490
Age 0.045 0.100 0.001 0.025 to 0.064
Type of disease (leprosy) 0.561 0.270 0.029 0.059 to 1.064
SARI Score −0.274 0.020 0.001 −0.321 to −0.227
Participation restrictions −0.740 0.030 0.001 −0.801 to −0.678
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Regression diagnostics showed that the assumptions were met. The residuals were normally distributed and showed no signs of heteroscedasticity. The Durbin–Watson statistic (1.769) suggested that the errors were independent. All VIF values were <5 and tolerances were >0.2, confirming the absence of multicollinearity. Cook’s distance values were <1, indicating that no single observation exerted undue influence. Together, these diagnostics collectively support the validity of the model, despite its high explanatory power (R2=0.928).

Table 5 shows that the linear regression model explained 19.0% of the variability in family members’ FQoL due to leprosy and podoconiosis/LF (R2=0.190). The model for family members of people with disabilities due to leprosy showed a positive significant association with FQoL (β=3.910 [95% CI 2.478 to 5.344], p<0.001) and occupation being student or doing unpaid work (β=3.640 [95% CI 1.702 to 5.578], p<0.001). It also showed a significant positive association with FQoL due to marital status (single) (β=1.803 [95% CI 0.151 to 3.442], p=0.033) and rural residence (β=3.160 [95% CI 1.130 to 5.190], p=0.002). Table 6 summarizes the results of the multivariable linear regression analysis.

Table 6.

Multivariate linear regression analysis results for family members of people with disabilities due to leprosy and podoconiosis/LF, Northwest, Ethiopia, 2022 (R2=0.190).

Variable Regression coefficient (β) Standard error p-Value 95% CI
Constant 88.940 1.050 0.001 66.760 to 70.920
Type of disease (leprosy) 3.910 0.730 0.001 2.478 to 5.344
Student/unpaid work 3.640 0.990 0.001 1.702 to 5.578
Other occupationsa 3.662 1.440 0.011 0.834 to 6.483
Marital status (single) 1.803 0.840 0.033 0.151 to 3.442
Residence (rural) 3.160 1.030 0.002 1.130 to 5.190
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aWaiver, guard, government work, non-governmental organization, carpenter, local alcohol maker.

Discussion

FQoL of people with disabilities and their family members

The aim of this study was to assess the level of FQoL, compare FQoL between groups and identify factors associated with FQoL. Our main finding is that there are no significant differences in FQoL scores between people with disabilities and their family members. The discussion traces the relationships between FQoL, stigma, participation restrictions and the mental health and well-being of people with disabilities. Key comparisons include overall scores and statistical significance between disease groups as well as correlations between FQoL and factors such as stigma, participation restrictions and mental health.

In this study, the overall FQoL of people with disabilities due to leprosy or podoconiosis/LF and their family members was 75.4. This is slightly higher than the mean of 71.7 reported by the same research team in another area of the Amhara Region of Ethiopia.20 The possible difference could be due to sociocultural44 awareness and education, as well as differences in sample size.20 Recently, the Ministry of Health appointed NTD officers in each district.6 This may facilitate health education about the disease for individuals and family members.

The FQoL score for people with disabilities caused by leprosy or podoconiosis/LF was 75.5. This finding is consistent with the results of a previous study conducted in Ethiopia.20 The consistency between the two studies suggests a recurring pattern in the lived experiences and support systems of families caring for individuals with disabilities resulting from leprosy or podoconiosis/LF. It may also reflect similar healthcare access and economic challenges that influence family life and well-being in these settings. This concordance strengthens the validity of the current study’s results and highlights the need for context-specific yet scalable interventions to support affected families and improve their QoL. The FQoL score among family members of people with disabilities due to leprosy or podoconiosis/LF was 75.2. This result is higher than the findings reported in an earlier study conducted in Ethiopia.20 One possible explanation for this difference is the variation in sample size, as the earlier study had a larger number of participants with podoconiosis/LF. Additionally, family members of individuals affected by leprosy may have benefited from the support and services provided by OPDs. This could have contributed to their higher FQoL scores. This topic is discussed further in the following paragraph.

The results of this study indicated that the mean FQoL score was significantly higher for people with disabilities due to leprosy than for those with disabilities due to podoconiosis/LF. This finding is supported by previous studies conducted in Ethiopia20 and Cameroon.14 The authors explained that both leprosy and podoconiosis impose a financial burden on affected households, but the burden is heavier for families affected by podoconiosis. Additionally, most people with disabilities due to leprosy in our study were members of an association or OPD. Membership in an OPD can significantly improve FQoL indirectly through social networks, access to resources, advocacy, improved psychosocial well-being and increased self-esteem. Thus it can be a useful part of leprosy rehabilitation schemes to combat stigma.45,46 In addition, OPDs are important for developing skills and empowering people with disabilities due to leprosy by providing vocational training, educational programs and microfinance opportunities.47

The present study indicates that family members of individuals with podoconiosis/LF-related disabilities have a significantly lower mean FQoL than those family members of individuals with leprosy-related disabilities. This difference underscores the varying challenges experienced by families depending on the disease the family member has. Having a family member with a disability caused by a single disease can place a significant burden on the household.8,15,19

Factors influencing FQoL

The following paragraphs discuss the relationship between age and FQoL. Older people often report higher FQoL than younger people. Those with leprosy-caused disabilities reported higher FQoL than those with podoconiosis/LF. This section also highlights differences in FQoL among family members of individuals with disabilities caused by either leprosy or podoconiosis/LF. Additionally, it explores the differential impact of occupational and marital status on FQoL. The study results also showed that family members living in rural areas tended to have a better FQoL.

In the present study, older adults with disabilities due to leprosy or podoconiosis/LF reported significantly higher FQoL scores than younger participants. A study conducted in Ethiopia48 found that an increase of 1 y in disease duration significantly increased the health-related quality of life (HRQoL) score of people with disabilities due to podoconiosis. Additionally, various studies have shown that older adults in developing countries participate in numerous activities, including caring for vulnerable populations,49 engaging in income-generating activities, serving as members and leaders of social organizations,50 mediating conflicts,51 advising on behavioural norms49,52 and preserving indigenous knowledge53 and cultural information.52 Thus, from the perspective of the benefits, merits and value of older persons in terms of their roles at the individual, family and community levels, they play a powerful role in improving the QoL of families. However, as Abebaw et al.54 explained, the physical domain of HRQoL declines with age.

In this study, people with leprosy-related disabilities had a significantly stronger association with FQoL than people with podoconiosis/LF-related disabilities. This finding was supported by the results of a previous study conducted in Ethiopia.20 The majority of people with leprosy-related disabilities in this study are members of OPDs. Being a member of an OPD has benefits, such as moral and physical support from peers.55,56 It also provides social, psychological and material support, which builds self-esteem and maximizes FQoL.57

The results of the present study showed that higher levels of stigma and participation restrictions were significantly associated with lower FQoL. This finding is supported by the findings of several other researchers.8,20,58,59 When a person experiences stigma and participation restrictions, there are many consequences in terms of their physical, social and psychological well-being. Because they do not participate in activities such as work or social gatherings, which are of greater concern to the community, their economic level is lower compared with healthy individuals.14,60 This can lead to mental health problems and greatly affect their QoL and that of their family. In contrast, although linear regression analysis did not show a significant association with mental health status, the result of an independent samples t-test showed a significant inverse correlation with FQoL. This finding is supported by studies conducted in Ethiopia8,54,61 and Bangladesh.62

Our study revealed that family members of individuals with leprosy-related disabilities had a higher FQoL than family members of individuals with podoconiosis/LF-related disabilities. This finding is consistent with our previous study conducted in Ethiopia.20 We found that people with disabilities due to the three diseases had a better FQoL than their family members. A study conducted in The Netherlands by Boelsema et al.63 also supported our findings.

In this study, among the family members of individuals with disabilities caused by leprosy or podoconiosis/LF who were students or engaged in unpaid work reported higher FQoL scores than family members engaged in farming. This finding contradicts our previous qualitative study results, which showed that students were forced to drop out of school, relocate and perform arduous work8 to take care for those with disabilities caused by these diseases. However, other studies support the current study’s findings, suggesting that students may have better access to educational opportunities and that those engaged in unpaid work may benefit from more opportunities for social interaction and support networks.64 These factors may contribute to improved FQoL. Conversely, researchers have found evidence that farmers often face economic challenges, such as unpredictable income and financial insecurity.65 Thus, when family members face challenges, the overall FQoL is affected.66

This study found that being single and living in rural areas were positively associated with FQoL among family members of people with disabilities due to leprosy or podoconiosis/LF. This contrasts with studies from Malaysia67 and Spain68 linking marriage with better QoL. However, similar to findings from Iran,69 single caregivers reported70 the highest QoL despite no significant association.69 Thus our result may reflect unique contextual factors. In rural Ethiopia, stronger extended family networks and fewer competing responsibilities may enable single caregivers to focus more on care and resource allocation. Spousal caregivers may also experience a higher subjective and mental health burden, which can lower the FQoL.71 Nonetheless, these explanations remain tentative and alternative factors, such as selection bias, cultural caregiving norms and disability severity, should be considered. Further qualitative research is needed to clarify these mechanisms.

Finally, this study showed a positive, significant association between family members of people with disabilities due to leprosy or podoconiosis/LF living in rural areas. This aligns with previous evidence suggesting that rural communities often exhibit greater social cohesion than urban communities,72 stronger economic resources through land ownership73 and access to domestic animals and other income-generating activities.74 These factors may facilitate caregiving and improve FQoL among affected households.

Integrating family-based training, psychosocial support for spousal caregivers and rural peer networks into Ethiopia’s MMDP program could strengthen caregiver well-being and overall family functioning.

Strengths and limitations of the study

The findings offer important insights into the factors influencing FQoL among households affected by leprosy or podoconiosis/LF but several analytical considerations merit attention. The relatively high R2 value (92.8%) observed in this study indicates that the selected predictors explain a substantial proportion of the variance in FQoL. This suggests that the included variables are highly relevant in capturing key determinants. However, such a high R2 value may raise concerns about potential model overfitting, whereby the model captures patterns specific to the study sample and may not generalize to other populations. To address this concern, we conducted all key regression assumption checks (normality, linearity, homoscedasticity and multicollinearity), all of which were met satisfactorily, thus supporting the model’s validity. Nonetheless, we recommend exercising caution when interpreting the strength of the associations and encourage future research to conduct external validations using data from other populations or regions to confirm the robustness and generalizability of our findings.

This study was a cross-sectional study that could only assess the relationship between the dependent variable and the predictor variables. Since the study relied on self-reported data for some variables, there is a potential for recall bias. This is particularly true for participants’ reporting of past events or experiences. This could have led to the misclassification of exposures or outcomes, which could have potentially attenuated or inflated the observed association. Consequently, the results should be interpreted with caution. Future studies using objective measurements or longitudinal follow-up would help to minimize this limitation. This study may be subject to selection bias due to the purposive sampling of family members. Since participants were not randomly selected, the findings may not be fully generalizable to all families of individuals affected by leprosy or podoconiosis/LF. The perspectives captured may reflect those of individuals who were more available, willing or able to participate. However, purposive sampling was deliberately employed to ensure that the family member most involved in caregiving or household responsibilities provided input, which was critical for understanding the family context and preparing for the follow-up RCT. Future studies could consider using random or stratified sampling of family members to capture a broader range of family perspectives and further minimize potential bias.

One limitation of this study is that the disability criteria used—grade 2 for leprosy and stage ≥2 for podoconiosis/LF—may not fully represent equivalent levels of clinical severity. This discrepancy could influence group comparisons, as observed differences may partly reflect variations in measurement thresholds rather than actual differences in disability. Future studies should aim to harmonize severity criteria to improve comparability across conditions.

Another limitation is the lack of standardized severity thresholds for the FQoL and SARI Stigma scores. These tools are widely used to assess family well-being and social stigma; however, the absence of universally accepted cut-off points limits the ability to categorize severity levels and compare findings across studies or populations. This should be considered when interpreting the results.

Conclusions and recommendations

Our study found that people with disabilities caused by leprosy, podoconiosis or LF, as well as their family members, reported a moderate FQoL. Stigma, participation restrictions and mental health issues were identified as key challenges to improving the QoL of people with disabilities. Additionally, a greater disparity in FQoL levels was observed among people with leprosy-related disabilities compared with those with podoconiosis/LF-related disabilities. The study also identified several factors influencing FQoL, including age, disease type, stigma and participation restrictions. Conversely, leprosy, student/unpaid work status, single marital status and rural residence were found to be positive factors contributing to higher FQoL in families of people with disabilities due to the three NTDs. The finding underscores the need for policies that integrate family-based care packages within existing NTD programs. This includes expanding psychosocial support, addressing stigma and tailoring interventions to the specific challenges associated with age, disease type, stigma, participation restrictions and sociodemographic factors affecting family members. Aligning these efforts with Ethiopia’s Health Sector Transformation Plan and its emphasis on equity, social inclusion and universal health coverage can improve long-term outcomes for households affected by NTD-related disabilities.

Importantly, this study serves as the baseline for an upcoming RCT to evaluate targeted interventions based on the determinants identified here. This next phase will provide robust causal evidence to guide scalable, evidence-based interventions to improve FQoL. Additionally, the observed association between marital status and FQoL warrants further qualitative exploration to better understand how family structures and caregiving roles influence outcomes.

Acknowledgements

We would like to express our sincere gratitude to all the participants of this study. We would also like to express our sincere appreciation to the leaders of the Leprosy Affected Association in the study area. Their unwavering support and cooperation were essential to the success of the data collection process. We gratefully acknowledge the Ethiopian National Association of Persons Affected by Leprosy (ENAPAL) for its comprehensive coordination and support throughout the family-based approach project. We are also grateful to the research assistants who collected the data: Enchalew Dagne, Simegnew Ayele, Sewnet Sintie, Fentahun Tamene and Yirga Tenaw. Additionally, we would like to thank Karthikeyan Govindasamy for his exceptional assistance with the data analysis during the early stages of the manuscript preparation.

Contributor Information

Moges Wubie Aycheh, Department of Care Ethics, Disability Studies University of Humanistic Studies, Kromme Nieuwegracht 29, 3512 HD Utrecht, The Netherlands; Department of Public Health, College of Health Sciences, Debre Markos University, P.O. Box 269, Debre Markos, Ethiopia.

Anna T van ’t Noordende, Disability Studies in the Netherlands, P.O. Box 1089a, 1081 HV Utrecht, The Netherlands; Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Postbus 2040, 3000 CA, Rotterdam, The Netherlands.

Nurilign Abebe Moges, Health Research and Development Directorate, Amhara National Regional State Public Health Institute, P.O. Box 641, Bahir Dar, Ethiopia.

Alice P Schippers, Department of Care Ethics, Disability Studies University of Humanistic Studies, Kromme Nieuwegracht 29, 3512 HD Utrecht, The Netherlands; Disability Studies in the Netherlands, P.O. Box 1089a, 1081 HV Utrecht, The Netherlands.

Authors’ contributions

Moges Wubie Aycheh (Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Software, Validation, Writing—original draft, Writing—review & editing), Anna T. van ’t Noordende (Conceptualization, Formal analysis, Funding acquisition, Methodology, Supervision, Validation, Writing—review & editing), Nurilign Abebe Moges (Data curation, Methodology, Project management, Resources, Supervision, Validation, Writing—review & editing), Alice P. Schippers (Conceptualization, Funding acquisition, Methodology, Supervision, Writing—review & editing).

Funding

This work was supported by the Leprosy Research Initiative (Award LRI 708.20.17). The research team conducted the study independently and the funders had no role in the study design, data collection and analysis, interpretation of results, decision to publish or preparation of the manuscript.

Competing interests

None declared.

Ethical approval

Ethical approval was obtained from the Ethical Review Committee of the College of Health Sciences at Debre Markos University. Permission was also obtained from the Amhara Public Health Institute, the East and West Gojjam Zone Health Departments and all woreda health offices prior to commencing the study. Written informed consent was obtained from all study participants prior to data collection and after the nature and purpose of the study were explained. Additionally, the study participants were informed of the confidentiality of the data prior to data collection. Informed assent was obtained from a parent or guardian for participants ages 15–17 y.

Data availability

Data will be made available upon request to the corresponding author.

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Data Availability Statement

Data will be made available upon request to the corresponding author.

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